You would have thought that, after a day like "the hardest one", we would have slept like, well, babies. But it didn't seem to be the case for either of us. Sleep was restless...there was a feeling of nerves that were present but quite different from the previous day. I liken it to acute worry vs. chronic. Tuesday, our focus and energy was about the potential of losing Sam. There was a chance that he wouldn't survive, or that we would be told nothing could be done. Even on Thursday, our favorite Dr. Day Nurse Coordinator shared that the overwhelming sense heading into surgery was that we were in a "doomsday scenario". Waking up on Wednesday contained the nerves of what might be with a still breathing Sam. Was his leg holding up? Would they be able to extubate? And most importantly, would the heart and head be alright? From a head/brain perspective, we were hoping for everything being the same as before the surgery. For the heart, we needed to see improvement. Both were critical. We weren't sure what order we would get information - for the head, or for the heart.
Elisa's friend had been nice enough to check on Sam again, and there was a level of comfort in getting pictures and texts. Initial words from the friend were positive. His heart rate had improved by 30% from the previous day, he seemed to be moving all of his extremities, and his oxygen saturations were strong. In fact, Sam was quite feisty. He was not a fan of the breathing tube. He wanted it out. He wanted to do it on his own. They had been resourceful. They cute a bink in half, which allowed Sam to suck while still being intubated. The nurse, later in the day, would tell us that he was the first child she had ever seen take a bink while intubated. The 4:00am picture gave me more sense of hope - it was a picture that really showed Sam's eyes. He was staring into the camera with a look that plainly said "and who are you?" But they were so different than the cute but foreign alien eyes I had seen the night before. These were Sam's eyes. I had immediate hope for the "head" part of the equation. We headed to the hospital, wanting as many answers as we could find.
Yet, upon arrival, we were quickly whisked away. No, Sam wasn't in trouble. He was getting fussy at the sound of Elisa's voice. Clearly, the boy wanted the tube out and some of momma's milk. We thought it best to keep him as calm as possible, so we headed to get some breakfast and give him some more time to rest. We did find out that Sam had a good night, and they found no unusual bleeding. His extremities were moving well (all of them), and his eyes were alert and moving together. Apparently, they were so happy with his progress that they had cancelled the MRA (it's an MRI...but of the vessels in the head) in favor of a simple head ultrasound. We were pleased at that positive report, considering that the previous day had been so melancholy. On the way to breakfast, we ran into the Neuro guys from PCMC and the University of Utah. They repeated their happiness with his progress and the lack of need for the MRA.
After breakfast, we returned to find them just starting the head ultrasound. Again, in an effort to keep his fussiness to a minimum, we went off to find the fabled Starbucks that was supposed to reside somewhere in University Hospital. While we got our mochas, Elisa and I had a war on Facebook about Twitter. Social Networking professionals must have been flummoxed at the irony of arguing in such a way. After we had our first coffee (there would be 3-4 today), we headed back to find a sleeping Sam. The ultrasound was done and they were just waiting for results. So it appeared we would know more of his head than his heart to start the day. If the ultrasound results were satisfactory enough, they would move to extubate. In an effort to be prepared, they had Sam do a trial run, where he was still intubated but was breathing on his own. He passed that test with flying colors.
While he was cleared to be extubated, the act of doing so wasn't happening. Sam was the first to protest. He wanted those tubs out. You could see, as he reached for his face, that the tubes were bothering. His crying was bothering me - because it was a silent cry. Literally, face balled up and tears come from his eyes. And no sound. It was unnerving, to say the least. I guess we use the sound of crying to determine the severity. Without that, it just looked awful. Luckily, we had just the cure for our worries and sadness as we waited for extubation. Once Sam was back asleep (still sucking on that half binky), Miles came to visit. Elisa and I escaped while Grandma got some time with Sam, and we had some milk and cookies with the little man. He loudly talked about Christmas and his favorite toys in the playroom, leading to discussions with a parent in the Ronald McDonald house about our kids. I'm always struck at how quickly we seem to be able to engage and bond with fellow ICU parents. This experience is so unique, only those that have been through it can understand it. But when you do, you DO.
After a nice visit, we returned to Sam to find out that extubation was ready to happen. They offered Elisa and I the opportunity to be right next to him when the pulled out the tube. Interestingly enough, we couldn't be right there. We stood back at the nurses's station and I looked away. They must be good, because when I looked back, the tube was gone and Sam was getting a mist through a mask to provide immediate help to his swollen throat. He struggled at first - he could cry (weakly), but you could tell that this body was finally realizing that it was under attack and was being forced to do the work on its own. Slowly, he regained control and I got to marvel a bit at how different Sam looked without a nasal cannula. The difference is striking - I have such a beautiful baby boy, but the nasal cannula tells you something is wrong. Without it, he looked delightfully normal. And then something fascinating happened. As Sam recovered, the doctors and nurses around him started to worry that he was retracting. They'd see him pull in with every breath and were convinced he was struggling. They made plans to put him back on the high flow nasal cannula. We, on the other hand, marveled at his retractions. You see, Sam has retracted with every breath since he was born. It took us telling the nurses for them to realize that this was baseline. And what we saw was comforting and surprising. Sam's retractions, while present, didn't seem as big. Before, with every breath, you would see his head bob up and down. He was bobbing a bit, but nothing like before. Could it be that the surgery was doing more than simply getting him out of heart failure?
Elisa soon got her wish to hold Sam, although we were now on the clock to wait 6 hours before we could try to feed him. When she held him tight, she noted how different his retractions felt. We were hopeful that, even on a higher oxygen (they still opted for high flow), perhaps his breathing wouldn't be nearly as hard for him to handle. I personally thought Sam could have moved directly to low flow. But the doctors were nervous and wanted to make sure. Honestly, the most disappointing part of the whole high flow/low flow debate was the realization that Sam couldn't leave PICU until he was off of high flow. That's right. A day after surgery, we started having visions of going to the regular floor. And I loved that I was disappointed that things weren't moving fast enough. Sam was proving, once again, just what kind of fighter he was becoming, so early in life.
I was next struck by the irony of the ultrasound tech returning for more scans. One of the reasons we were waiting for extubation all morning was to ensure the ultrasound was good enough. We got the word that it was and extubation took place. Now, he was back saying that they needed more scans. Nothing had been found on the first that was concerning, but there were pictures they wanted that they hadn't gotten in the first view. It cracked me up that Sam was sleeping on Elisa's lap while the tech scanned his head. Elisa commented again that Sam's head wasn't bobbing nearly as much as he slept. Hope, like a small balloon, began to swell inside of me. Yet, if hope was being inhaled, Sam's pungent odors were causing rapid exhalation. The dye used in the embolization procedure was now leaving Sam's body - through farts, breathing, and even secretions (sweating it out!). It took me the better part of the day to finally determine what it smelled like. My best description would be "really bad chinese". No, not "stinky chinese". Like almost rotten chinese. So Elisa (and I, while holding him later on), angled our heads away from Sam and out towards the nurses station. That's where the fresh air was located. Yet, this causes the nurses to inquire as to what we needed. It looked like we were staring at them. No, we weren't. Just trying to find good air, ladies and gents. And while I tried to escape the bad chinese, Elisa went back to the day before, during surgery. It simply smelled like ass. I immediately wondered if Anna, her cousin, would describe the smell as sour.
I wish the smell was the only worry on our mind about Sam, but it wasn't. Soon after we got to hold him, Elisa started to notice that Sam felt warm. At first, I thought maybe it was just the stink and the secretions - maybe it was just toxic and it made his body warm up. Perhaps, he was just snuggled in too tightly. But when the nurse checked his temp, he had a slight fever (101). We were both disappointed. It felt like throwing another log onto the fire - one more thing to manage and be worried about. What did the fever mean? Was he sick? In trouble? Struggling? And all we would get was the unhelpful "it's not uncommon" response from practitioners. What does that even mean? Interestingly, their belief that it wasn't a big deal seemed different after lunch. When we returned to see Sam, they had taken blood and were testing for all sort of viruses that he could have picked up. I worried that this would put him under stress or keep us in ICU. And then two visitors calmed my fears. The first was from Dr. Tosky. He came to see how Sam was, and stressed again that we had a long haul ahead of us. But when I told him about the fever, his comment was "yeah, that's because of us". He fully believed it was a reaction to surgery and nothing more. He thoughtfully left me with the comment that Sam "is doing really, really well". Yes he was. Soon after, the nurse from neurosurgery came to check on Sam and had the exact same response to the fever as Tosky. She explained that infection from surgery wouldn't appear for 4-5 days. This was too soon - it was the body's reaction to the trauma of surgery. It helped me breathe a little more evenly.
As we sat around, we started wondering what happened next. It felt clear to me that Sam's head and neurological progress was positive. I wanted to know about his heart. Unfortunately, we found out that his heart news would have to wait. Dr. Day wasn't really in a rush to get another echo. He wanted to give the heart time to heal a bit. The echo would happen the next day, along with a new test of the protein in his blood. We were hoping for a decrease. So while the heart wouldn't be solved today, we put on our own doctor equipment and started talking about his progress that we saw. It was clear, hours after extubation, that the retractions weren't a fluke. They were still there, mind you, but the head bob was nearly gone. We could hold Sam and not feel like we had a mexican jumping bean in our arms. Put him on the shoulder and his head stayed next to mine. I remembered his head moving up and down next to mine in the previous months of his life. And then I touched his chest.
Of all things that I beat myself up about (when it comes to not getting Sam in sooner), it's this sign. From the day he was born, you could really feel Sam's heart beating out of his chest. It was so noticeable that our pediatrician thought he might have a heart condition (remember way back in the first Sam's story?), and it never really left. In the days before we went to PCMC, I felt his heart more than ever before. I thought it was just because he was bigger. I'm now sure that his heart was simply running out of room. It was lodged between his spine and his ribcage, and though I felt it, I didn't act. I felt ashamed. But as I held Sam, and placed my hand over his heart, I initially couldn't even feel the beating. I had to patiently wait and then I could feel it - maybe a smidge more than when I put my hand on Luke's chest. But it was definitely a decrease. In my mind, I believe his heart is shrinking. Hopefully one day, I'll get verifiable proof in x-ray format.
As Sam got near time to eat, he also continued to wean off of high flow. Before we knew it, the respiratory therapist was replacing the high flow with low flow, and Sam was back to 2 L of 50% oxygen. One more hurdle out of the way in our hopes to go to the floor. And then Elisa got the go ahead to feed Sam. To say that he was eager was the understatement of our stay. He latched immediately and ate aggressively for 8 minutes. Elisa burped him and was about to switch sides when the nurse said she had to stop. He had to be restricted before he could resume full eating. Elisa was pissed. Sam was livid. He had started to eat again, and had to wait another hour to eat more. He let everyone around him know of his displeasure. After a successful eating episode an hour later, they seemed to relax the restrictions and Sam could eat as normally. Except it wasn't normal. It was better. In the past, Sam would suck, breathe, suck, breathe, suck, breathe, breathe, breathe. It was like he needed to recover. Now, there was a more natural cadence to his eating - and not a lot of stopping to get his breath.
As our day started to wrap up, Elisa and I started to glow with pride at our little lion cub. He was roaring so loudly...as in showing signs of improvement. I couldn't stop staring at his retractions. I couldn't move my hand from over his heart. And when the nurses said they were "prepping" for us to go to the floor the next day, I stood in awe. I secretly believe that the nurses and doctors were in awe too. The day before had been full of doomsday. I sensed that many weren't sure that Sam would return from University Hospital, and that others thought he would come back in really bad shape. Sam was proving his doubters wrong, and us right in refusing to say goodbye, but instead offering him a bunch of "see you soons". Sam was recovering. His head was clearly showing signs of stablization. And although we weren't sure yet, I was starting to believe in the signs that his heart was responding as well.
We said goodnight to our little man, and headed home for another evening. After all, if we were going to the floor, we'd need sleep. We'd have to start doing a lot more work out of the ICU. Sam was clearly proving his doubters wrong, and we needed to be ready for him to do it the next day...when we turned to matters of his heart. When we would start to understand if heart "failure" was a current predicament or a thing of Sam's past.
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